“I put my hand on his face to turn it toward me. He took a breath, opened his eyes, smiled at me and said, ‘I love you mommy.’ Then, he shut his eyes. His breathing eventually stopped. I sat there and didn’t care if he could hear me or not … We always sang the song ‘You are my Sunshine.’ I just sat there and sang to him … I told him how much I loved him.”
Through tears, Ruth Scully, 34, recalls the night of Feb. 1, 2017.
She had just taken a shower – her first in days.
It was a little after 9 p.m., and her 4-year-old son, Nolan, was lying in his hospital bed.
Two hours later, he died in his mother’s arms after fighting an indescribable battle with cancer.
Despite the horrific storm Nolan endured, he was a ray of sunshine, leaving everyone in his path filled with a sense of amazement.
Nolan’s story is gaining attention from millions of people. On April 4, his mother shared a simple photo on Facebook, exposing the brutal truth about childhood cancer, and ever since, the world has been rallying to help raise awareness about this vicious killer that’s claiming millions of lives far too soon.
This family’s life hasn’t always been so complicated. Ruth and her husband, Jonathan, got together in 2008, after he repeatedly came to her office trying to sell calendars for his fire department. After going to the same party one evening, the two were inseparable.
On Nov. 11, 2011, Ruth and Johnathan got married, settled down in Leonardtown, Maryland, and began a wonderfully simple life as newlyweds.
“Things were very easy, normal and typical,” Ruth says. “We went to work, came home and spent time together.”
Already parents to a daughter named Leila, the couple decided it was time to expand their family. They began trying for another baby before getting married, and one month after the wedding, Ruth was pregnant.
On Sept. 7, 2012, Nolan was born – and he was absolutely perfect.
“He had platinum blond hair,” Ruth recalls, “He never cried, and he had dark green eyes. He was happy, met all his milestones, and he was just perfect.”
In May 2015, the family was surprised to learn that another baby was on the way. Although unexpected, they were thrilled and immediately started preparing for life with three children.
But two months later, life took another turn that nobody saw coming.
“In July, Nolan started showing signs of allergies,” Ruth says. “His nose would run, he would be really tired, and as it went on, things started getting really bad. I had to have him sleep with me all the time because it was almost like he would stop breathing. I was taking him to the doctor every week through September and October. He was on antibiotics, and then they thought it was a sinus infection. Something wasn’t right. He was very uncomfortable.”
Ruth took Nolan to an ear, nose and throat specialist (ENT) who immediately suggested removing his adenoids and tonsils.
On Nov. 6, doctors performed the procedures, and shortly thereafter, Nolan began having uncontrollable nosebleeds.
On Nov. 16, it was time for his follow-up appointment.
“The doctor sat me down and said, ‘I have horrific news for you,’ ” Ruth recalls. “Any time tissue is removed, they have to send it to pathology. Nolan’s came back positive for rhabdomyosarcoma (an aggressive and highly malignant form of childhood cancer). She said it’s not in a good spot. That’s all I remember her saying.”
Ruth doesn’t recall other details from the conversation. Two hours later, they were in the pediatric oncology clinic at MedStar Georgetown University Hospital.
Immediately, staff made Nolan and his parents feel like family.
“They opened the door, and his entire team was standing there,” Ruth says. “They said, ‘We’ve been waiting for you, Nolan. Come over and play!’ Meanwhile, I’m in a trance, barely moving. There I am two hours before, thinking I was going to work, and then I’m having a conversation about a chemo port being inserted into my son. I can’t put it into words.”
Things went downhill very quickly. Nolan had a 9 cm tumor located right under the brain, above the throat, in his nasopharynx. Doctors needed to perform a CT scan, a PET scan and insert the port, but sedation was risky because Nolan’s airway was obstructed.
“They thought putting him on a ventilator was safer,” Ruth explains. “It took seven days – he fought the ventilator, bit the tubes in half, and his lungs collapsed. It was a mess, but he did it.”
It was then determined that Nolan had a subtype of the cancer called embryonal rhabdomyosarcoma. Thankfully, it was responsive to treatment and isolated to one large tumor.
Nolan immediately started chemotherapy. During that time, Ruth gave birth to her third child, Brayden, on Dec. 26, 2015.
Three weeks later, the family relocated to Philadelphia so Nolan could begin proton beam therapy at the Children’s Hospital of Philadelphia (CHOP). He received treatments five days a week for a total of six weeks.
In April 2016, Nolan went home. He was responding well and was able to breathe with ease again. He was feeling good.
“That’s why they called him Rollin’ Nolan,” Ruth says. “Right after chemo, he was running in circles, pedaling ride-on toys … if he wasn’t bald, white and skinny, you would never know. He was amazing.”
'But something wasn't right'
Nolan’s tumor had shrunk in half, and things were looking optimistic. Aug. 29, 2016 should have been his last day of chemo.
But early in July, Ruth felt that something wasn’t right.
“He started snoring again at night,” she explains, “becoming lethargic, and he had mucus coming out of his nose. I told doctors something was wrong, but they said his scans from two weeks before were fine.”
One night, Nolan was rushed to Georgetown because he stopped breathing in his sleep. A scope revealed a massive tumor had grown behind the original.
“One of the cells from the original tumor became resistant to part of the treatment,” Ruth explains. “Once it became resistant, it mutated. His cancer changed to alveolar rhabdomyosarcoma, which is very rapid, aggressive, and hard to treat.”
What should have been Nolan’s last day of treatment turned out to be his first, as he resumed chemotherapy. He was deemed ineligible for surgery due to the tumor’s location, but doctors found a cranial and neurological team willing to attempt the procedure.
On Oct. 24, Nolan underwent a 13.5 -hour operation.
“They were the longest hours of my life,” Ruth says. “The doctors came out of the room holding their medical bags … their eyes were red. But they removed every piece of that tumor. Until the day Nolan passed, he was a walking miracle.
Doctors had to replace a large chunk of his palate and took muscles from inside his head to graft it.
Because Nolan’s cancer had a history of not spreading, doctors remained optimistic. They said he had a fighting chance. Genetic tests even proved that his tumors were reactive to treatment.
'He wanted to go to Mickey's house'
After surgery, Nolan had to take a five-week break from chemo to allow his skin and muscles to heal before getting radiation.
“He said he wanted to go to Mickey’s house,” Ruth says, “so we took him to Disney World. Our community did a fundraiser to send him to Mickey’s house. We stayed for six days. He got tired but was fine. Nothing ever got Nolan down.”
The day before Thanksgiving, he went for an MRI and a PET scan. By the time they were leaving the clinic, Nolan’s MRI was back.
“The radiologists came down,” Ruth recalls. “They said they had to take a look at Nolan because what they were seeing was unbelievable. There was nothing there. The tumor didn’t grow back. The oncologist told us to go home, to have a great Thanksgiving. There was no reason to think the PET scan would be bad.
The following Monday, Nolan was due back for chemo. All of a sudden, though, the social worker called them into the family room. Ruth’s heart dropped.
“I walked in, and the child life therapist was there, the oncologist, the nurses,” she says. “That’s when you know you’re getting not-ideal news.”
The PET scan showed large spots of metastatic rhabdomyosarcoma in Nolan’s lungs.
The cancer had spread – but doctors weren’t ready to give up. They wanted to go in and attempt to remove the tumors.
Ruth was speechless.
“I went in there thinking, ‘We have this, all is fine,’ and now, we’re facing the equivalent to open heart surgery,” she says.
On Dec. 27, Nolan had his chest cavity opened, his lungs taken out and eight very large tumors removed. All of them came back positive for metastatic rhabdomyosarcoma.
Recovery was expected to be slow – but in true Nolan fashion, he left doctors stunned yet again.
“I can not put into words how amazing this boy is,” Ruth says. “He was taken off the ventilator that day and out of the ICU in 12 hours. He said, ‘I have walrus teeth.’ I said, ‘What do you mean, poot?’ He called his chest tubes walrus teeth – he helped doctors pull them out. He was so proud of his huge scar on his head because he said he looked like Frankenstein.”
A little more than one week later, Nolan went home but developed uncontrollable diarrhea and vomiting. Upon returning to Georgetown, he tested positive for C. Diff, a type of colitis.
Immediately, Ruth felt it was something far more serious.
“On Jan. 30, I asked for a full body scan,” she says. “He just wasn’t himself.”
On Feb. 1, the day of the test, Ruth was brought back into the room to discuss results.
“I walked in … and they were all in there again,” she says. “His oncologist was visibly shaken. The CT scan came back – there were massive tumors wrapped around his bronchial tubes and also wrapping around his heart. They had grown within a few weeks. And they grew back with a vengeance.”
At that moment, Ruth was told she was going to lose her son.
'The moment I ran out of hope'
“The doctor looked at me and said, ‘At this point, this is not surgically able to be removed.’ It’s untreatable and we need to make him as comfortable as we can,” Ruth recalls. “And that was the moment I was told my son was dying. That was the moment I ran out of hope. And Nolan never once complained.”
Later that day, she went to her son’s room to tell him the fight was over:
Ruth: Poot, it hurts to breathe doesn't it?
Nolan: Weeeelll.... yeah.
Ruth: You're in a lot of pain aren't you baby?
Nolan: (looking down) Yeah.
Ruth: Poot, this cancer stuff sucks. You don't have to fight anymore.
Nolan: (Pure happiness) I DON’T??!! But I will for you Mommy!!
Ruth: No Poot!! Is that what you have been doing?? Fighting for Mommy??
Nolan: Well DUH!!
Ruth: Nolan Ray, what is Mommy's job?
Nolan: To keep me SAFE! (With a big grin)
Ruth: Honey ... I can't do that anymore here. The only way I can keep you safe is in Heaven. (My heart shattering)
Nolan: Sooooo, I'll just go to Heaven and play until you get there! You'll come, right?
Ruth: Absolutely!! You can't get rid of Mommy that easy!!
Nolan: Thank you Mommy!!! I'll go play with Hunter and Brylee and Henry (friends who had gone to Heaven)!!
After their conversation, a doctor came in the room, and Nolan exclaimed, “Guess where I am going? I am going to Heaven!”
“I will never be able to put into words how amazing he is,” Ruth says of her son. “He was made of nothing but love. He would walk into all the rooms, pat the kids on the back and say, ‘Don’t cry, Nolan is here.’ All he wanted to do was help people.”
For the next few days, they played and watched YouTube. Nolan was on morphine, so he slept a lot. Whenever he woke up, he would ask for his Nerf gun and his police uniform.
“On Feb. 4, I was lying in bed with him,” Ruth says. “One of the families had ordered us dinner. Nolan looked at me and said, ‘Mommy, you can eat, but I am not gonna eat.’ I said, ‘You don’t have to.’ But I would have them bring his tray every night, with a hot dog and no bun because he liked to look at it. I said, ‘Are you sure I can go eat?’ He said, ‘Yea Mommy.’ ”
Later that night, Ruth took out a book – a pediatric will – and asked Nolan some questions.
“He picked people’s clothes for his funeral, he chose his pallbearers,” she says. “He left each of us something of his. He wanted to take his Nerf guns and his tablet in his Heaven box. And he wanted to be buried in his police uniform.”
A little after 9 p.m., Ruth asked Nolan if she could take a shower.
“He said yes, but he wanted to turn in bed to look at me,” she says. “I told him I will just be two seconds, so he looked at me and smiled. The second the bathroom door clicked, he shut his eyes.”
'I love you Mommy'
Nolan slipped into a deep sleep. When Ruth got out of the shower, the entire team was standing around the bed. There were tears all around.
“They said, ‘Ruth, we think he’s passing.’ I jumped in his bed, he was still turned to the bathroom door, and I put my hand on his face to turn it toward me. He took a breath, opened his eyes, smiled at me and said, ‘I love you mommy.’ Then, he shut his eyes. His breathing eventually stopped. I sat there and didn’t care if he could hear me or not … We always sang the song ‘You are my Sunshine.’ I just sat there and sang to him … I told him how much I loved him.”
Nolan passed away at 11:54 that evening.
“And here’s the irony,” Ruth says. “He was born Sept. 7 – Childhood Cancer Awareness Month – and he died on World Cancer Day.”
Ruth laid with her son for more than two hours, holding onto her baby.
Nolan’s burial was nothing short of magnificent – just like his life.
It was always his dream to be a police officer – a policeman with a police motorcycle and a police dog.
“When the funeral home was bringing his body back to our hometown, the Washington D.C. police accompanied them to state line – people lined up from our home all the way to D.C. – that’s a two-hour drive,” Ruth says. “I had asked Nolan, ‘What do u want to happen at your funeral?’ Lights, sirens – he wanted it big. And he got it. Of all the bad and hate in the world, if everyone was like Nolan, there would be no problems. He always had time for a hug. He was just the best guy. I miss him so much.”
'Something needs to happen'
The night before learning Nolan’s cancer had spread to his lungs, Ruth snapped a picture of him lying on the rug next to the shower. He never wanted to be away from his mother, and did this every night.
Last week, Ruth posted the photo on Facebook, next to a similar image of the rug, only Nolan was no longer there.
“Oh Lord,” she says. “That picture, it’s something you can relate to. It’s not the angelic bald kid on the commercials, this is real. It’s happening to hundreds of thousands of kids a year. We have no funding. No research. My son was on adult doses of chemo the whole time. There has been little advancement of how to cure this. I saw today, between 2001-2010, the rate of childhood cancer has increased 13 percent. For Nolan, I paid a lot of money for DNA genetic testing. He had no mutations in his DNA, no syndromes, no medical reason to have this. That’s what’s so frustrating. Every kid’s cancer is different. Every tumor is genetically different. You can’t treat it as a whole. Truly, I think that’s where we lack.
“Before I walked into that ENT’s office, I never gave this a thought. I flipped the channel when it the commercials come on. Everyone thinks it’s so rare, but it’s not as rare as you think. The pain and suffering he went through is just unimaginable. He vomited every day for 18 months. People need to know this happens. Something needs to happen.”
To learn more about Nolan's story and childhood cancer, visit the family's page.